Genetic Knowledge Dilemma

I just recently received a comment alerting me that the genetic test done by 23andMe is now being sold for just $99. When the price was higher and collected fewer data points, it was easy to decide to hold off on those tests. Kind of like how I’m never an early adopter with technology. I am always content to wait for version 3 or even version 10. The longer I wait, the more I’ll get for a lower price. Now that 23andMe is both affordable and more extensive, they removed the barriers that were keeping me from getting the test.

Yet, now I hesitate. Why?

My Health Journey

Although I’ve always been interested in nutrition and fitness, it wasn’t until I was exposed to the ideas of Art De Vany that I really believed that I was in far more control of my health destiny than I had imagined. I never thought I’d lose 20 pounds of fat without surrendering muscle, but I did. I always thought I’d have some level of rosacea. I had no idea that changing my diet could eliminate it, but it did. Later I became cold temperature tolerant and learned how to control my hunger for fasting. Both of these seemed impossible to me.

The Paleo approach made me believe that I was resilient and could tackle anything. Maybe my health outcome wasn’t just about genetics. Then I learned about epigentics. Epigenetics is about the environmental information you pass to your genes. Food, exercise, stress and toxins. The short version is that by change the message your genes receive, you can alter their expression. My post Learning About Epigenetics from Dr. Bruce Lipton goes into this topic more.

Then about a year ago I started to question a lot of the health information I had learned in the prior few years. There seemed to be a lot of holes and conflicting opinions. I went from confident and empowered to confused and at times frustrated. I haven’t posted much on this because I am still thinking about some of these ideas. Maybe the genes do get the final say?

Does Knowing Help?

Let us assume that we each carry a genetic marker for a future chronic illness. One of the selling points in knowing is that we can make lifestyle changes to delay or prevent the expression of that illness. But shouldn’t we be doing that anyway? What if we are? If one already eats a low toxin nutrient dense diet, exercises safely and engages in other healthy lifestyle activities, does knowing make things better or worse? I used to believe that different illnesses required different approaches, so in those cases you’d want to know which one you had and pursue that path. Not anymore.

If I try and imagine myself getting genetically flagged for each of the major chronic illnesses, I can’t see where I would change my behavior that could improve my outcome for that one option. Conventional Dr. Oz type doctors think preventing heart disease has one set of recommendations and preventing cancer of diabetes might have another. I don’t. Remove the toxins and eat a nutrient dense diet. Get good sleep, exercise safely and hope for the best.

Morality and Privacy

Let us say that I took the test and discovered I was high risk for something that would either end my life prematurely or have tremendous health costs. I could then purchase life and health insurance based off what I know, but this would technically be dishonest if not fully disclosed. Other policy holders would end up paying for your lie if the illness manifested.

If you are married or have young children, then knowing might make more sense as you can plan accordingly. The downside is others that care about you are now worrying about something negative that may never happen.

Privacy is an interesting angle. Although you may believe that you could keep all your medical information private, you can’t assume that. Confidential data is being hacked all the time. But one doesn’t even need to hack systems to ascertain your health status.

There are companies that mine data based off your social network statuses and the purchases you make with credit cards. The book The Power of Habit: Why We Do What We Do in Life and Business by Charles Duhigg has a section on how companies are doing this. Retail giant Target customizes direct mail advertisements to women that they were able to detect were pregnant from purchasing patterns and basic demographics. If they already figured out the formula to accurately predict pregnancy, they are likely already working on ones for chronic illnesses.

If businesses trying to build loyal customers are engaging in this level of data mining, then you can assume future employers will do the same. Should they devote company resources to train the job candidate with a 2% chance of developing cancer or the other candidate that has a 5% chance of getting diabetes? Crunch the numbers and you’l have your decision. Yes, it is illegal to deny employment to someone based on heath status, but that doesn’t mean it won’t happen. The employer just needs to find a legal reason to deny employment.

What To Do?

For me this is a dilemma. I am very interested in collecting health data for things that I believe I can control, such as learning about a food intolerance. With genetics, I don’t know if I can gain anything from that information, other than piece of mind if the test comes back clean. But that is as gamble. It may not comes back clean. Worrying about something you believe may not be in your control isn’t good for ones health. Should I get the test? I am leaning towards not getting tested for the reasons cited above.

Comments

@Nick – I am reminded of something I read from Taleb. He said information that is not actionable is gossip. When I look over the core recommendations to minimize or delay chronic illnesses, I’m already engaged in those activities.

But just because you can’t change the outcome of something that might come to pass doesn’t mean that there aren’t other changes that you might make in your life to prepare for it financially, etc. Not always desirable, for sure, but I tend to lean towards the I want to know crowd.

I was recently watching some program on a medical issue, I think to do with the eye, or maybe the brain (my memory for details sucks!), where there was a very simple test that could be performed to put you into one of two categories. 1) Everything would work out fine. 2) Nothing could be done, and you would die. In either scenario, the recommended treatment is the same, though in scenario 2 it does not good.

I’d like to think that I would choose to know, though many people on the program decided that they did not want to know. I’d probably still undergo the treatment just to be sure, but I’d want the option. And there are tons of other decisions that I’d be able to make knowing the truth.

Now, I realize that this is not exactly the same as finding out information for its own sake, but I’m still leaning the same way.

The big things don’t need fine-grained testing. My father was one of 5 children. Four of them died of heart disease (the fifth, the only slim one, smoked for 60+ years and finally died of lung cancer in her 80s.

So, heart disease, check!
Early onset cancer, not much chance.

I’ve also practiced a kind of “knowledge hormesis” on myself. Everybody says, “don’t weigh yourself every day! You’ll get discouraged and quit trying!” Well, I’ve weighed myself almost every day for the past 3 years. I’ve become indifferent to the fluctuations, i.e. sometimes I do an intermittent fast and the next day I’ve gained weight. It just shows that there’s hysteresis in the system.

As a medical professional, I have a different view of genetic testing that most people. I know that many scientists who are truly businessmen develop testing that makes money, but does not necessarily benefit those tested. There are benefits to science for us to get tested, as we aid them in data collection over long periods, that is we are lab rats. There are some legitimate reasons to do genetic testing, i.e. chorea diseases, Tay-Sachs, or any other devastating disorder that can be passed on to offspring. This type of testing allows people to make informed decisions about their actions. The rest of us still live in an environment that is uncontrollable beyond good health practices and reasonable caution. Don’t get me wrong, there is real benefit to being well-informed, but you also need to realize that a lot of research is not good research, that it cannot be replicated, and that it is done by humans who make mistakes. I read everything, but I don’t act on much of it. Testing for heart disease leads to the same recommendations that we all know we should follow. Get a reasonable amount of exercise, eat a good diet, don’t work a highly stressful job, don’t smoke cigarettes. OK, you already knew that! Maybe it scares some people into doing things they wouldn’t otherwise do, maybe. There is solid research about fasting and calorie reduction, but how many people do you see following those recommendations? Thousands of people who already know what to do hasten themselves into an early grave by not following reasonable recommendations on diet and exercise. Human nature is our most serious health enemy. Last time I checked, mortality is still 100% for everyone. I still believe after years of research that the best way to live as long and healthy a life as possible is to do those things you know will most likely avoid disease as long as possible. Your best efforts will not stop the inevitable, but it may lead to a happier, longer, and healthier life. Hope you don’t get hit by a drunk driver, have a toxic environmental exposure, or get shot by an unstable person! Nobody really knows how anyone’s story will end.

I just wanted to give you an example where genetic testing could be beneficial. My husband has been eating a paleo/Perfect health diet for a while now, and was still having digestive issues, severe migranes, and depression. He went and saw an ND in Seattle, who after listening to his life health story, decided to do a genetic test for him. This test is a newer test, and not that many dr know about it.

Anyway, apparently some people have a mutation on a gene that cannot convert folate into its active form to be used by the body. There are two main ways the human body does this. He had the test for this done, and apparently both of genes for converting folate were mutated, meaning that he was not utilizing it in anyway. This can also cause absorption issues with other b vitamins. Since receiving this test, he has been supplementing the active form of folate for a month now. I can tell you, it is as though he has come to life. I cannot believe the difference.

I just wanted to share this example of genetic testing done right. I think that if you are eating very well, exercising, etc, and still having issues, you should talk with an ND or MD for a possible genetic abnormality that may be causing the issue. The $99 test seems iffy. But genetic testing does have its place.

@Malarie – Thanks for sharing. I also hadn’t thought about those types of specific pieces of data you learn from those tests. I was just considering the big chronic illnesses. My next week I should have a better idea if I am going to get the test. I have heard excellent things about 23andMe.

Another example: Several male relatives on one side of my family were diagnosed with colon cancer in their 40s through 60s. At least one female relative was diagnosed with endometrial cancer. One of the male relatives received genetic testing for Lynch Syndrome, a mutation that severely impairs the correction of mistakes made when copying DNA (leading to an 80% risk of colorectal cancer!), and discovered that he possesses it. A second relative was tested and discovered that she is a carrier.

I will be getting tested soon as well. Knowing whether I have this mutation seems like a clear win. At least one clinical trial (http://www.ncbi.nlm.nih.gov/pubmed/22036019) found that regular aspirin use greatly reduced the risk of cancer among Lynch Syndrome carriers. Early detection is important with colon cancer and regular colonoscopies are also recommended for carriers. If I have children someday, they will benefit from knowing whether there is a chance that they inherited the mutation from me (i.e. if I don’t have it they won’t need to get tested).

With that said, I signed up for 23andMe several years ago using a similar $99 promotion. They didn’t (and still don’t) test for Lynch Syndrome, and the reports that I received from them were mildly entertaining but useless. I canceled my account as soon as I was able to.

Genetic testing interesting, but reading this post and the other comments I wonder about a few things:

1. What is the potential for a “false positive” on the 23andMe test? Is there a danger that you might be misdiagnosed?

2. Why test so broadly? If you are testing for conditions that are at least somewhat genetically related, why not just get targeted tests for any condition(s) that may run in your family?

3. Is it the best use of your money right now? I am still in the age cohort where I am statistically more likely to die of an accident than disease. I might be better served spending that $99 to pay someone else to get up on a ladder and clean my gutters rather than doing it myself. I know that you don’t drink alcohol, but it would seem that anyone who does drink would be much better served spending all of that $99 for a cab ride home after a night on the town rather than face the moral, legal, financial, and health risks of getting behind the wheel. To paraphrase Dan John, do you need to spend $99 on a genetic test if you aren’t fastening your seat belt every single time you get in a car?

I definitely agree with you and @Becky, though, that a relatively inexpensive broad range genetic test makes sense if you are thinking about having children.

I like Becky’s comment. I was thinking myself that genetics is so complex, and interacts so much with environment, that for the most part, there doesn’t seem to be any point in testing for the vast majority of people. If there’s a condition that’s easy to test for in your family, I can see how that would be different, of course.

But then, I’m autistic, so I might be a little biased.

I say, you want to live a long happy healthy life, do what makes you happy. If that includes geeking out over genetic testing, then go for it. Otherwise, why bother?

No point in having a long unhappy life, wasting time on all the wrong things, after all.

– What if you take the test, and there is something in there that leads to curing all of your headache woes?

– What about possible Gene modification therapy…for lack of a better way of saying this, what about the possibility of turning off and on certain genes for your benefit?

– What about getting the test and having someone (your doctor) review the results without telling you what they are, and simply as a way to know what to look for and watchout for and to know what tests to put you through.

Genetics is still a field in its infancy, however the power of its discoveries is probably not going to be matched or exceeded by another scientific breakthrough for quite some time. That being said, I am in the camp of more knowledge is always better than less knowledge, even if it is relatively little when compared to what the field will have to offer in the future. I have long felt that what we don’t know has far more power to shape our lives than what we do know. I took the test last year when trying to zero in on what is affecting me as well as my family. I can say without a doubt that it was worth it, so much so that I have given thought to moving toward entering the field in whatever way I can help. Most things we do in life involve some sort of reasoning process in order to help stave off the possibility of making a critical error of some sort, but unless you are in serious financial distress, I can’t see how saving $99 is going to proportionally enhance your life more than finding out information that might have greater consequences should that information remain hidden from you.

I worked with someone who had narcolepsy and saw firsthand what a very strange and worrisome condition it is. I was sent into his office to wake him up as he would often fall asleep at his desk for no reason at all.

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